Nationwide Huntington's disease registry to improve research

Australia’s first nationwide registry to map people living with the rare, neurogenerative Huntington’s disease (HD) has reached its first 100 participants, a significant step towards paving the way for better care and services across the country.

The Map-HD Registry is an initiative of the Huntington’s Disease Network of Australia (HDNA), led by Professor Julie Stout at Monash University’s Turner Institute for Brain and Mental Health.

Adults and children in Australia affected by HD are invited to sign up, enabling the registry to map participants’ locations, obstacles in accessing HD clinical care, community services and experiences with Commonwealth-supported disability insurance entitlements.

It’s estimated that around 2160^[1] Australians have a diagnosis. There is currently no cure for the condition and too many people are not receiving the care and services they need.

Professor Stout said that reaching the milestone of 100 participants across all states and territories is a big step towards collecting the information required to best prepare Australia for new, life-changing treatments and clinical trials.

“Since establishing the Map-HD Registry, we’ve signed up around 5% of Australia’s total HD population. The vital information collected in the registry will show exactly where HD support and clinical services are needed, increase the efficiency of HD research, connect people with research and clinical trial opportunities and generate new knowledge to inform the development of new treatments.”

One of the Australians particularly excited about the Map-HD registry is Tony Mims, who found out at 19 he was carrying the gene that gave him HD.

Mims first started to notice subtle symptoms at the age of 40 and they have been getting gradually worse over the last five years. Living in Melbourne, he is grateful for the excellent medical specialists and services he has been able to access, along with support of family and friends.

“Before Map-HD there was no real map of HD in Australia and it can be an isolating experience. I’m also aware that, living in Melbourne, I have many benefits and am able to access services that I know aren’t available to a lot of families.

“By filling out my form and registering I’m hoping that I can contribute to a total mapping of peoples’ HD experience, which people can then use to build better support for other families around the country. It will also be a great way for people to keep in touch with HD research and other developments that I hope will one day find an effective treatment for the disease.”

^{[1] https://huntingtonsvic.org.au/wp-content/uploads/2021/11/HCC-Gap-Analysis-Report-FINAL-210211-1.pdf}

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